Who can achieve seizure control?
The majority of people with epilepsy have seizures that can be controlled with drug therapy. However, at least 3 out of 10 people with epilepsy continue to have seizures because available treatments do not completely control their seizures.
The Epilepsy Foundation is committed to accelerating ideas into therapies to stop seizures for the one third of people living with epilepsy who have persistent seizures despite all existing therapies and who are already following the behaviors outlined in this #AimForZero report.
Among the 70% who could respond to medications, many are not seizure free, settling for “good enough” or living with bothersome side effects.
For example, studies show that among adults with active epilepsy (more than one seizure in the last year), a large number do not take medications to stop their seizures nor do they see an epilepsy specialist (also known as an epileptologist).
Learn more about the importance of taking medication.
Community Understanding About Seizure Control
In recent years, the epilepsy community has recognized that living with the best seizure control possible and aiming for "zero seizures" should be a goal all people with epilepsy and their health care providers strive to reach.
Despite this consensus among experts in the epilepsy community, survey results showed only half of respondents with epilepsy considered "no seizures of any type" as the primary definition of good seizure control. Other commonly reported definitions of seizure control include:
- having seizures that don’t impact day-to-day life
- significant reduction in seizures
- only having auras
- only having seizures in bed, at night
Caregivers of people with epilepsy rated "no seizures" as critically important. However, the majority did not feel that the people (in their care) had good seizure control. Another alarming survey finding is that 1 in 3 people who said they had achieved seizure control reported having seizures monthly or, in many cases, more frequently.
Complete Seizure Control Reduces Risks
It is crucial to understand, however, that complete seizure control — meaning zero seizures ever — can reduce the risk of SUDEP or accidents from seizures.
Survey results showed that "seeing an epileptologist (epilepsy specialist)" and "visiting your doctor regularly" were considered steps to reduce the risk of having a seizure and improve epilepsy management.
Respondents ranked these behaviors far below "taking medications" and "getting enough sleep." This may indicate that people with epilepsy recognize that proper medication and sleep management are important for epilepsy management. People with epilepsy underestimate the importance of their physician and the key role of a specialist in helping explore all treatment options for complete seizure freedom.